Day +4137: For three years straight we toured the nation…

“When we get through we needed a vacation
We wanted to party and get a little rest
So we packed our things and headed out west
We got our surfboards took the beachball out
Jumped in a limosuine ready to ‘wipeout’…”

Would love to procrastinate blog another day but there’s a danger of never getting around to it. Monday’s CRNP and oncologist visit, in addition to the medication changes (see yesterday’s blog), involved discussions about my new treatment plan.  Dr. believes that biopsy site pain is highlighted from the procedure itself, trying so hard to get marrow in the midst of severe fibrosis, and getting into nerves. But she doesn’t think the CT scans will be helpful when the disease fibrosis is driving the train; however, she doesn’t object either so I’m having CTs of pelvic, lumbar, and thoracic regions on April 13, the soonest date available. Michael and I understand we’re not likely to get any usable results but would like any info available nonetheless.

Although bone marrow  biopsy yielded little information, based on my pain levels, locations,  poor response to pain meds, along with counts dropping without spontaneous recovery and blasts showing up in peripheral blood, they strongly believe the disease is progressing. What we don’t know is if the Vidaza is working but just can’t keep up with so much fibrosis or if it has failed. The Venetoclax will assist in clearing out the cells killed by the other chemo and slow or stop the fibrosis to give Vidaza the boost it needs to do its job. Again, this is not a cure, but an effort to maintain a decent quality of life as long as possible. We hope to know if it’s helping within the month. There’s no way to put a timeline on what will happen or to predict whether it will work at all.

As Michael mentioned previously, insurance approved the Venetoclax appeal. It will be added to my treatments starting Monday, 4 pills per day in addition to the 3 daily Vidaza injections. Vidaza will be the usual 5-day treatment but Venetoclax will continue daily for at least another week or two and resume with next Vidaza cycle. It’s all a bit overwhelming. 

Side effects may include nausea and constipation (unpleasant) and lowering blood counts even further (risky). I’ll likely need daily labs and transfusions 2-3 times per week for awhile. To facilitate this, I’m having a Hickman catheter inserted Monday (like the one I had during transplant) and staying at Hackerman-Patz pavilion across the street from Hopkins until my counts stabilize in a week or two. Due to Covid, there are many more restrictions than 12 years ago. I’m allowed only one caregiver (Michael –  before I could have 3 rotate), and once we check-in, he is not allowed to go home until I do. Grocery shopping will be curbside or delivery, and laundry on premises with on-call transportation to the hospital. I’ll be allowed no visitors.

We’re so fortunate to have great families who will make sure everything is taken care of at home while we’re on our, as grandnephew Joseph calls it, “Hopkins Staycation.” I’ve been complaining about missing vacations the past 3 years. Be careful what you wish for. But we have house sitters with backup who will stay at our house and take care of cat and critter chores, and whatever else needs doing.

We’re trying to get everything lined up. Insurance won’t cover Hackerman but it’s only $64/night including parking, quite a bargain. I have labs tomorrow and possibly transfusions before the surgery Monday. We’re making a packing list…mostly trying to wrap our heads around it all and hoping for good outcomes.

Thanks to all who’ve reached out to us. It means a lot.

xoxo, Karen 

p.s. Had wonderful visits with niece this afternoon and grandnephews this evening 🥰.

13 Comments:

  1. Karen and Michael,
    I am sending you loving thoughts.It was wonderful talking to you. I wish and hope all this will make you better,
    Stay strong!!!

    Love you both

    Carol

  2. I’m sending you the warmth of my heart. Love, L

  3. Hope this new plan works well. Staying across the street from Hopkins was not bad at all. Convenient. Besides missing your own home it eliminates the long drive. Sending good thoughts to you.

  4. Many many hugs coming to you from me and others!
    I’m so glad you have so many helpers.
    I pray for you and Michael daily.
    I’ve written many posts but deleted as Michael’s post scared me.
    I never want to say anything wrong that will make you upset.
    No matter what the rest of us have been through in our life, no one, no one knows
    What you are feeling. It’s your own experience. I wish I had a “Michael! He’s doing an incredibly hard job.
    That’s my opinion. You my dear lady, are an incredible human! !!
    My wish, besides the big one of full recovery, is for you both to sit in the lob and tell me how bad our food tastes!!
    So much love to you both💋💋💋💚💛💙💋💋💋💛💚💜💋💋🧡💜💙💚💛💋💋💋💋❤️💚💋💙

  5. Stay strong Karen, Lynne and I love and miss you guys very, very much. If there’s anything we can do for you guys, just say the word.

    sending massive hugs

  6. Hope you are able to get some rest on your Hopkins Staycation. They better have excellent services and accommodations!
    I just sent you an email. Hope you got it.

    Love you.
    Cathy <3

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